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March20 podcast Dr Hazen
anti-TMA pill in a year or 2 ? (scroll 12 mins)

Additional info: https://youtu.be/811v7RLXP9M
MEBO Karen
at UK Findacure conf 2020

Scroll down and select country
MEBO TMAU TESTING DISCONTINUED
(2012-2017)

MEBO Map Testing & Meetups


Full details : https://goo.gl/TMw8xu
want listed ? contact info@meboresearch.org

MEBO - UBIOME study 2018

'PRESS RELEASE'

NCT03582826
ClinicalTrials.gov

MEBO Gut Microbiome Study
"Microbial Basis of Systemic Malodor and PATM Conditions (PATM)"
Funded by uBiome Research Grant

"Microbial Basis of Systemic Malodor and PATM Conditions (PATM)"

Dynamics of the Gut Microbiota in
Idiopathic Malodor Production
& PATM

Started May 2018 - Ongoing

Current people sent kits : 100/100
3 kits per person

NO LONGER RECRUITING

Participation info : LINK English

MEBO Private Facebook Group
to join : go to
or contact
Join/Watch the weekly
BO Sufferers Podcasts

MEBO TMAU Videos

Petitions

TMAU Petition world
TMAU UK end total:262
TMAU UK ends 23/01/20
TMAU Petition USA end total 204
USA : Moveon open
TMAU (Dominican)
Metabolomic Profiling Study
NCT02683876

Start : Aug 2016
Stage 1 : 27 Canadian volunteers to test
Latest click here (26 oct) :
17 samples returned


Note : Stage 1 is Canada only.
Return cut-off date : passed
Analysis can take 6/8 weeks
Analysis start in/before Nov
MEBO Research is a
EURORDIS and
NORD Member Organization
See RareConnect
rareconnect.org TMAU

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Blog Archive

Denver TMAU Test Lab survey click here
click to Read more/less

USA survey for anyone who wants to improve Denver TMAU test

begun : Dec22
end : no ending for now

A trainee genetic counselor is working at the Denver TMAU test lab. Probably as part of her training. As a project she wishes feedback on any aspect of the Denver TMAU test and process. You can fill in the survey and/or email her (email address is in survey). It's meant for USA people, but perhaps others can give their view too (as we have so few opportunities).

quote from her rareconnect post

"Hello all! I wanted to make you aware of a research study being conducted to better understand the experience and needs of individuals with trimethylaminuria with a goal of being able to create improved patient and healthcare provider education materials. Any participation is completely voluntary and all responses remain confidential. Feel free to use the contact information within the link with any questions or share the survey with others with TMAU."

see this post for more details

https://www.meboblog.com/2023/01/denver-tmau-test-survey-tbc-who-it-is.html

Tuesday, March 12, 2019

Online Live Group Session on Anxiety Report

Click on icon
Session report
On February 24, 2019, MEBO's Mental Health Director, Crissan Rosalia, Health Psychologist, MSc., conducted our first online group session on "Coping with Anxiety". There were approximately 15 English speaking participants from around the world, including the United States, Canada, Europe, Africa and the Philippines. It was uplifting to see the openness of many participants to talk openly and freely about their symptoms, social situations and tips with each other. Crissan provided us with excellent guidelines throughout the session to empower sufferers with better coping skills.

Crissan has provided us with a follow-up of the session write-up while protecting the confidentiality and privacy of all participants. This piece is a true depiction of our experience and it's an easy, free-flowing reading that captivates the reader throughout. It covers identifying levels and characteristics of anxiety, thoughts, vicious cycle, triggers, physical sensations, and action/behavior.

Questions discussed were the following,

  • What makes it difficult for you to manage your anxiety?
  • What are healthy ways to cope with anger, bitterness?
  • How does one deal with long-term rejection?
  • How does one prevent from becoming a recluse?

The second online group session will be held on Sunday, April 28, 2019 at the same venu, Zoom. More details will follow soon.

Crissan Rosalia's Bio
For the past year, with handouts and her Mental Health Monthly Column in this blog, Crissan has been providing us with greater understanding and direction on topics, such as,


Crissan has also participated in a TMAU raising awareness short documentary in a scientific show in the Netherlands, FOCUS on NRT.

We thank Crissan for her steadfast professional support, love and dedication.

María

María de la Torre
Founder and Executive Director

A Public Charity
maria.delatorre@meboresearch.com
www.meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)



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A EURORDIS and NORD Member Organization

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